Why ME/CFS remains under-researched and under-treated | ME/Chronic Fatigue Syndrome

I am writing to express my gratitude to George Monbiot for his insightful article ('I don't want to get better': Outdated treatment for ME/CFS patients is a national scandal, March 12). I have been living with severe fatigue for over three years since I contracted a mild case of coronavirus infection. It's hard to explain what that looks like, and it's no wonder it's not well understood. In my experience, a lack of energy will further limit your stamina for weeks or even months, so I feel like you need to overcome your instinct to push yourself.

To other people, it shouldn't seem like I'm exhausted or overextended all the time. But when we give in to our instinct to do more, we push ourselves back into a state of permanent fatigue, where our expectations of what we can do lag behind our declining physical fitness.

You can't measure how much energy you use, especially cognitively. And you won't be able to gauge how tired you are until you reach a state where activities such as reading and speaking become difficult, which means it's difficult to recover. Every waking hour is expending energy, and overexertion can have repercussions days later, making cause and effect unclear.

NHS help was limited to advice on pacing myself. I had a work capacity assessment for Universal Credit, but by the end of the 40 minute phone call I was struggling to speak. I was surprised when it turned out I was the right person for the job. Although I was able to overturn this finding in court, the experience was painful and drained my energy for months.

We hope that eventually a physiological cause and treatment will be discovered, but in the meantime, we need to adapt our health and welfare systems to support people living with chronic fatigue. Must be updated.
Ewen Tanner
Eveley, Derbyshire

As the mother of a 33-year-old woman who has had ME/CFS since contracting the virus at the age of 15, the attitude of medical professionals in this article was evident in our experience. At the time, I was told to “send her to her school,” which made her 10x worse. Just five years ago, the hospital forced her to undergo a simple training called “Exercise and Psychological Solutions.'' When the pandemic hit, the first thing we said to each other was that ME/CFS was going to increase significantly. There was, but it's called the long corona. We are passionate that ongoing research will also focus on ME/CFS and help the thousands of people whose lives have been ruined by this misunderstood condition.
Name and address provided

As a recovered ME/CFS patient, I agree with every word of George Monbiot's article. However, he omitted the next step after correct diagnosis: effective treatment. I recovered by taking sertraline (an antidepressant) as part of a small trial at the Royal Free Hospital in London in 1990. Our mental status was assessed upon participation in the study. None of us were depressed. No one knew why sertraline worked. Later, it was found that ME patients were unable to get deep sleep, but sertraline restored deep sleep. No other clinical trials of sertraline appear to have been conducted, perhaps due to the attitude of the medical establishment.
Cynthia Flood
Haddenham, Buckinghamshire

George Monbiot has written an excellent critique of why medical professionals still fail to provide adequate care to ME/CFS patients.Now new guidelines A report from the National Institute for Health Research Excellence (Nice) recognizes that ME/CFS is a genuine and disabling condition, but there has been disappointing progress in implementing key recommendations. Ta.

Nice recommends making a diagnosis within three months of the onset of symptoms. However, many people wait a year or more for a diagnosis. Few existing specialist referral services can provide the kind of multidisciplinary care Nice recommends, and services for her 25% of people who are severely affected are not prioritized.

Access to specialist treatment remains patchy in England and non-existent in Scotland, Wales and Northern Ireland. Children with ME/CFS remain at risk of inadequate childcare arrangements. Regarding conditions that cause damage to the country, £3.5bn a year Despite affecting at least 250,000 people, government investment in research and management has been disastrous. This disregard, based on now discredited science, can no longer continue.
Dr. Charles Shepherd
ME Association Honorary Advisor

I was depressed, but not surprised by the article. He worked as a general practitioner for 34 years and cared for many of his CFS patients until I retired. Some switched to my list because their previous GP felt their symptoms were purely psychological. They felt they had significant physical symptoms of fatigue that affected their health and psychological reactions to the impact it had on their daily lives. They often described a clear medical history of prolonged exposure to previous stress, followed by unpleasant viral infections, particularly glandular fever, from which they were unable to recover.

One of the few good things that has come out of the pandemic has been increased awareness that viral infection can lead to long-term Covid. The symptoms are very similar to his CFS. Research is currently underway on the lingering coronavirus and I sincerely hope that it will help people with CFS as well.
Dr. Ross Kennedy
bristol

As someone who has recovered from chronic fatigue (In some cases I and Long Covid elsewhere), we share George Monbiot's frustration. However, he exposed his own lack of understanding by slamming the idea supported by scientists who believe that the condition is a complex interaction between biological and psychological symptoms. I am.

The target of most of his ire is the claim that physiological responses can become dysfunctional in some patients, and that fear, including the belief that they will never recover, fuels this cycle. Interactions between the brain, beliefs, perception, hormonal and neural changes It can affect many body functions and cause debilitating symptoms. We need scientists to continue studying these conditions. Understanding that this biological disease can be influenced by unconscious expectations will help patients like us receive appropriate support, including appropriate psychological strategies.
Fiona Symington Oxford
paul garner Emeritus Professor of Infectious Diseases, Liverpool School of Tropical Medicine

George Monbiot seems to confuse a doctor's attention to a patient's fears and emotions with dismissing the patient's illness as somehow “unreal.” I believe that such a view is ill-informed and likely to be of no use to patients with any disease.
Professor Michael Sharp
Psychiatry oxford university